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he Spectrum of Behavioralutcomes after Extreme Prematurity:egulatory, Attention, Social, and Adaptive Dimensionsichael E. Msall, MD, and Jennifer J. Park, MA

Advances in obstetrics and neonatology have increased the survival rates of prematureinfants with very preterm (<32 weeks) and extremely preterm (<28 weeks) gestations.However, survivors have a high frequency of challenges in academic and social skills.There has been an increased emphasis on examination of outcomes beyond survival ratesand rates of neurosensory disabilities at ages 18 to 24 months (eg, cerebral palsy,blindness, deafness, global development delay). One of the key strategies for understand-ing pathways of risk and resilience is to examine behavioral, social–emotional, and adap-tive competencies. The purpose of this paper is to apply the International Classification ofFunctioning framework to a spectrum of behavioral outcomes after extreme prematurity,describe useful tools for measuring behavioral, social, and adaptive competencies, as wellas review model outcome studies before middle childhood. Thus, we can use currentinformation to begin to understand pathways underlying behavioral health, well-being, andsocial competence.Semin Perinatol 32:42-50 © 2008 Elsevier Inc. All rights reserved.

KEYWORDS low birth weight, very low birth weight, extremely low birth weight, very preterm,extremely preterm, developmental health, emotional health, adaptive health

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ong-term neuronsensory disability and adverse healthoutcomes of very low birth weight (VLBW, �1500 g) and

ery premature (VP, �32 weeks gestation) infants have beenell documented during the past two decades.1 Although

dvances in obstetrics and neonatology throughout the980s and 1990s have increased the survival rates of infantsith extreme prematurity (EP, �28 weeks gestation) and

xtremely low birth weight (ELBW, �1000 g) status, thereas not been a decrease in rates of major neurodevelopmentalisabilities, such as cerebral palsy and serious intellec-ual disability (IQ �55).2,3 In addition, high rates of moreubtle disability impact on regulatory, attention, social, anddaptive skills.

The long-term behavioral, social, and adaptive well-beingf children receiving life-saving neonatal intensive care hasecome a source of concern. Increased long-term survival

niversity of Chicago, Pritzker School of Medicine, Kennedy Center onNeurodevelopmental Disability, Institute of Molecular Pediatric Sci-ences, Chicago, IL.

ddress reprint requests to Michael E. Msall, MD, University of ChicagoPritzker School of Medicine, 5841 S. Maryland Avenue MC0900, Chi-

tcago, IL 60637. E-mail: mmsall@peds.bsd.uchicago.edu

2 0146-0005/08/$-see front matter © 2008 Elsevier Inc. All rights reserved.doi:10.1053/j.semperi.2007.12.006

reates increased opportunities for these children to be com-ared with peers in mainstream education, examine theirocial skills in the community, and understand the precursorf behavioral competencies required for independent living.In this chapter, we will review the behavioral, social, and

daptive competencies of children who survived VLBW andLBW status. Although the majority of past literature hassed birth weight classifications, especially in the Unitedtates, we will also describe survivors using VP and EP ges-ational age classifications whenever possible. We will alsoxamine how environmental effects (eg, family life, humanapital, and neighborhood/community supports) interactith medical factors in promoting resiliency in preschoolears and in middle childhood.

he ICF Modeln the 1970s, it was assumed that the majority of VLBW andLBW survivors would have neurodevelopmental disabilityr challenges in emotional, behavioral, or adaptive compe-encies continuing throughout childhood. Too often size atirth and degree of prematurity were assumed to be predic-

ive factors for all aspects of a child’s physical and emotional

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Behavioral outcomes after extreme prematurity 43

ealth later in life. However, increasing evidence demon-trates that the continuum of developmental and behavioralompetencies does not depend on a single determinant, butany interacting components of health status, home envi-

onment, developmental status, social stressors, and, in par-icular, family and community supports. We should alsoeep in mind that these elements also influence one another,nd the combination of these interactions affects the overallell-being of the child. To better understand the complexathways of child development, behavioral health, and well-eing, a variety of models and frameworks have been devel-ped.4 Of these, the International Classification of Function-ng (ICF) model illustrates health and disability throughomponents covering Body Function, Body Structure, Activ-ties, and Participation.5

Body function refers to the physiological functions of bodyystems (such as breathing, growth, and digestion), as well assychological functions (such as regulating behavior, attend-

ng, remembering, and thinking). Body structures are ana-omical parts of the body, such as organs and limbs, as well astructures of the nervous, sensory, and musculoskeletal sys-ems. Activities are tasks, including learning, communicat-ng, walking, carrying, feeding, dressing, toileting, bathing,eading, calculating, writing, interacting with peers, andolving a problem. Participation means involvement in com-unity life, such as friendships, education, chores, recre-

tional, religious, civic, and social activities (eg, scouts, 4H).he ICF Model also includes contextual factors in a child’s

ife and highlights environmental and personal factors. Envi-onmental facilitators include policy, social, and physical fac-ors, such as mentors, positive social attitudes, and legal pro-ections. Environmental barriers include negative attitudes ofthers, nonaccessible transportation, and discriminatoryractices. Personal factors include age, gender, interests, andense of self-efficacy. Figure 1 shows how the ICF model cane applied to a 5-year-old boy with attention and learninghallenges, and how different components of everyday lifenfluence one another. In this model, one can highlight hown asthma care plan and multimodal management strategiesor attention deficit hyperactivity disorder (ADHD) are essen-ial for academic success.

Table 1 provides several additional scenarios for childrenf different ages and medical background risks with respecto regulatory, behavioral, and social challenges. Note that

igure 1 ICF Model. A 5-year-old with ADHD after 900-g birth

teight and 27 weeks gestation.

hese facilitators and challenges do not stem from a child’shysical health alone, but also from their developmental sta-us and social environment, including family life, caregiver’sork status, caregiver’s attitude, presence of sibling(s), and

ommunity resources.

ehavioral, Attention,ocial, and Adaptiveutcomes of Prematurend Low Birth Weight Children

ach year in the United States, there are approximately0,000 children born after VP gestation and with VLBW sta-us. In the past 25 years, the field of medicine has seen arowing body of research documenting the complex path-ays underlying adverse outcomes in physical, developmen-

al, emotional, and behavioral health. In the early stages ofhese outcome studies, much of the attention was focused onajor neurodevelopmental disorders, such as cerebral palsy,

lindness, deafness, and severe intellectual disability (ie, in-elligence scores measured by standard tests of more than 3tandard deviations below the mean). However, the perspec-ive of concerns regarding behavioral and psychologicalealth in these children has shifted in recent years as moreealth care professionals have begun to consider a broaderange of outcomes and concepts.6-8 Several meta-analyses ofase-control studies between 1980 and 1990 found thatchool-aged children who were born VP or with VLBW ex-ibited both internalizing disorders (eg, anxiety and socialithdrawal) as well as externalizing problems (eg, ADHD,ppositional and disruptive behavioral disorders) comparedith term peers. Children who survived VLBW and ELBWorn between 1990 and 2000 were also found to be prone to

nattention, hyperactivitiy, and social skill difficulties.9

Four major domains of psychological development in pre-erm infants are relevant to understanding outcomes and in-lude: (1) intellectual development (eg, cognitive, linguistic);2) behavioral and emotional status (eg, temperament, regu-atory problems); (3) social functioning (ie, ability to formnd maintain social relationships with peers and adults); and4) adaptive (eg, educational and community self-suffi-iency). Several research studies suggest that VP and EPchool-age surviviors are at risk for a spectrum of behavioral,ocial, and learning disorders compared with peers born withormal birth weight.8,10-13

ntellectualhere is a dose response curve between degree of prematu-ity/low birth weight and suboptimal cognitive outcomes,ven in the absence of severe physical or mental impair-ent.13-16 VLBW and ELBW infants are especially vulnerable

o specific learning disorders, impaired executive function,onverbal learning disorders, and poor academic achieve-ent.8,13,16,17 In their study of school-aged children whoere ELBW infants, Anderson and Doyle found that 1 in 5 of

heir preterm cohorts had repeated a grade in elementary

Table 1 ICF Model Scenarios in Children with Regulatory Behavioral and Social Challenges after VLBW and ELBW Prematurity

Dimension Definition Girl, 4 Years Boy, 5 Years Girl, 3 Years Boy, 2 Years

Pathophysiology Molecular/cellular mechanisms 800 g, 27 weeksgestation, Grade 1IVH

Grade 4 IVH, 1000 g,28 weeks gestation

1250 g, 30 weeks, SGA twin Prenatal polydrug exposure,1400 g, 31 weeksgestation

Body Structures & BodyFunctions

Organ structure/function Speech delays Hemiplegia;neurobehavioral,and adaptivedelays

Small stature; Anxious Failure to thrive; Cannottalk in phrases

Activity (Functional)Strengths

Ability to perform essentialactivities: feed, dress, toilet,walk, talk

Running, Drinks withstraw; Vocabulary of20 words

Climbs slide andgoes down easily;Loves talking andreading books

Rides bike with trainingwheels

Loves stacking blocks androlling ball with olderbrother

Activity (Functional)Limitations

Difficulty in performingessential activities

Unable to talk inphrases; Screaming,tantrum whenfrustrated

Difficulty withfasteners, Difficultywaiting andtransitioning;Impulsive

Inattentive in large groups;Difficulty with transitions

Needs 1-on-1 supervision

Participation Involvement in communityroles typical of peers

Unable to play withpeers; Only sleeps4 hours

Quality schoolservices andbehavioralmanagement

Loves to be read stories Loves to go swimming atYMCA

ParticipationRestrictions

Difficulty in assuming rolestypical of peers

No full-day preschool;Uses supplementalnutrition products

YMCA will not lethim on playgroundbecause he fallstoo much

No children live near herhome

2-hour ride to daycare;Mother died 2 years ago

Contextual Factors:EnvironmentalFacilitators

Attitudinal, legal, policy, andarchitectural facilitators

On waiting list forspeech therapy;Loves to watchbrother age 5 usethe computer

Mother is not able toattend pediatric CPsupport groupsbecause she worksfrom home

Community speech therapistworks closely with teacherand school therapist

Adoptive foster parentinsists he will learn;Knows he benefits fromroutine; Family attendschurch

Contextual Factors:EnvironmentalBarriers

Attitudinal, legal, policy, andarchitectural barriers

Mother exhausted dueto lack of sleep andcannot seek thesupports needed

Denied life insurancepolicy

Very fearful of bus rides On waiting list for speechtherapy.

Abbreviations: CP, cerebral palsy; IVH, intraventricular hemorrhage; SGA, small for gestation age.

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Behavioral outcomes after extreme prematurity 45

chool, and almost 2 in 3 preterm children required extraducational assistance. Among term children, the rates ofrade repetition were 1 in 14, whereas 1 in 5 required specialesources from school. The authors highlighted that ELBWurvivors have challenges across all cognitive domains com-ared with the normal birth weight (NBW) controls.17

Cognitive impairment in children who were born with VPnd VLBW status persist into adolescent and young adultears. These risks especially impact on neuropsychologicalrocesses underlying language, visual perception, memory,

earning, and executive function.1,17,18 Such challenges oftennduce low self-esteem, adolescent insecurity, and develop-

ental output difficulties, which in turn can trigger second-ry behavioral and emotional problems, such as anxiety andepression.

ehavioral/Emotionalhe exact degree to which premature birth and low birtheight status affect behavioral and emotional problems in

pecific school-age children is still largely unknown. How-ver, along with cognitive impairment, behavioral and emo-ional disorders occur at high rates for school-age childrenho survived prematurity and low birth weight status.19 Oneeta-analysis on behavioral outcomes by Bhutta and col-

eagues revealed that children born preterm have a 2.65-foldisk for developing ADHD during school age. These childrenre also at high risk for externalization problems, such asxhibiting aggression and disruptive behavior.9,13 Thesemotional outbursts can lead to school expulsions or serve asbstacles in developing friendships.20 In one study, Mick andolleagues have found that low birth weight status was aignificant risk factor for ADHD that is not accounted for bynvironmental (eg, socioeconomic status), hereditary (eg, pa-ental ADHD or parental behavior disorders), and other pre-atal (eg, maternal substance abuse) factors.21

As with cognitive challenges, behavioral and emotionalroblems often have a dose response relationship to degree ofrematurity, with ELBW and VLBW being most impacted byhese disorders compared with moderate low birth weighteg, 1501-2499 g) or NBW (�2499 g) children.8,17,20,21

LBW and ELBW survivors have a high rate of depressionnd anxiety, compared with their term, NBW counter-arts.9,22,23 In a recent study, Patton and colleagues have

ound that prematurity and low birth weight were associatedith a high rate of depressive disorders in adolescents, withver 11-fold increase of depressive disorder in adolescentsorn with prematurity and low birth weight compared withhe control population.24

It is still unclear whether very and extremely low birtheight themselves are directly responsible for anxiety andepression in middle childhood, or if these outcomes areainly caused by other factors, such as low self-esteem due to

ognitive challenges, environmental adversities, and genderifferences (differential vulnerability of girls to anxiety andepression and boys to ADHD and aggressive behavior).hether degrees of prematurity increase these gender differ-

nces is not known. n

ocial Functioningt is not clear what factors cause social interaction difficultiesn children born who survive very and extremely low birtheight status. In some children, difficulty in making friends

nd negotiating social relationships may result from ADHD,or which VLBW and ELBW children are at higher risk. Chil-ren with ADHD are impulsive and lack the patience to waitor their turn in group play. A second factor contributing tohallenges in social competencies may be due to overprotec-ive parenting.8,9 The interaction between children born veryremature and their mothers has also been often described asless socially engaging,” often because feeding, respiratoryrganization, and state organization make maintaining posi-ive social relationship with caregivers difficult.8 Lastly, lackf socialization skills can also reflect a trajectory of difficultyn nonverbal communication and learning skills. This makest difficult for the child to pick up cues of closeness, distance,nd nuance during social encounters.

Teens who were born with prematurity or low birth weightescribe their relationship with NBW and gestational ageeers as problematic, suggesting that not only are they awaref their lack of socialization skills, but that problems in socialunctioning can potentially last through young adulthood.runau and colleagues have found that teens born withLBW demonstrated less confidence in their abilities to par-

icipate in athletics, excel in school achievement, have ro-antic relationships, and demonstrate job competencies.16

ardner and colleagues, in their study of teenagers in main-tream schools who were born before 29 weeks of gestation,oted that compared with their control group, extremely lowestational age (ELGA) teens without significant disabilityere perceived as less well-adjusted by their parents in their

nvolvement in extracurricular activities. Furthermore, botheachers’ and self rating describe ELGA teens as being lesselpful and considerate toward others.23

daptationchool problems can be “defined as the need for specialchooling, education below age level (class repeated or latechool entry), special support in regular school, or poor per-ormance in comparison with pupils in the same class.”8 Of-en, the average academic performance of children who wereorn prematurely and/or with low birth weight is reported toe significantly lower than that of their normal peers, espe-ially in reading, spelling, and mathematics.3,16,25-27

Closely linked to cognitive ability, school adaptation andailure are nevertheless associated with other factors, such asehavioral/emotional problems, and social functioning. Sev-ral researchers contend that persistent developmental de-ays, neurosensory and behavioral problems, and languagekills are among the early predictors of school problems.8 Inne study of 10-year academic outcomes among pretermhildren, less than half (41%) were performing at grade levels opposed to 70% of term children.25 Preterm children wereore likely to receive special education and classroom assis-

ance, and three times as many preterm children were diag-

osed with learning disabilities than their term peers. Gross

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46 M.E. Msall and J.J. Park

nd colleagues noted that not only were cognitive andchievement test scores strongly associated with school suc-ess, but parent and teachers’ reports of problem behaviorere also related to school outcomes.25

nvironmental Attributesnvironmental factors such as social risk (eg, distressedeighborhoods), family capital (eg, parental education, one-r two-parent family), and socioeconomic status (SES) areey factors that contribute to both management resourcesnd outcomes for VLBW and ELBW survivors.6,9,18,22,24,25,28

In many instances, poverty and low SES contribute to aascade of stressors, including limited parental educationnd employment, prenatal exposures to both legal (eg, alco-ol and tobacco) and illegal (eg, cocaine, opiates, and meth-mphetamine) substances, poor quality health status, andnadequate parenting and early childhood supports.29,30

It has been suggested that the prevalence of substancebuse, illicit drug use, and smoking among women frommpoverished or low SES background is largely due to theense of helplessness, low self-esteem, difficulties copingith stress, and pressure from coping with difficult financial

ituations in everyday living.29,31,32

It is important to note that children who are born prema-urely and/or with low birth weight due to maternal impov-rishment are also faced with the risk of not receiving properostnatal care in terms of food, therapy, medical care, cogni-ively stimulating resources and activities, and adequatehild-to-parent interaction. This is called double jeopardy,here children are twice exposed to adverse outcomes due to

heir parents’ poverty and low SES background.33

ssessing Early Childhoodocial–Emotional Competencies

everal tools are available for health professionals to describearly social, emotional, behavioral, and adaptive competen-ies and are listed in Table 2.

The Infant Toddler Social Emotional Assessment (ITSEA)as developed to assess internalizing, externalizing, and reg-latory behaviors between 1 and 3 years as well as socialompetencies.34 This tool has been used in community sam-les of children as risk for developmental, behavioral, andocial problems. A screening version of this evaluation tool,he Brief Infant Toddler Social Emotional AssessmentBITSEA), is currently being used in the US Neonatal Re-earch Network.35

The Achenbach System of Empirically Based AssessmentASEBA) includes parent and caregiver/teacher report formC-TRF) of the Child Behavioral Checklist (CBCL 1.5-5) asell as the Language Development Survey (LDS).36 It canap to Diagnostic and Statistical Manual of Mental Disor-ers, Fourth Edition (DSM4) disorder of pervasive develop-ent disorder (PDD), ADHD, and oppositional defiance dis-

rder (ODD).37 b

The strengths and difficulties questionnaire was developedy Goodman as a mental–behavioral health screening toolnd captures attention, social, anxiety, and conduct disordersrom ages 3 to 16.38 One of its utilities is to describe assets asell as challenges and in detecting behavioral disorders in the

etting of chronic illness.39

The Vineland Adaptive Behavioral Scales, 2nd Edition is aeasure of communication, daily living, and social skills

rom birth to adulthood.40 In addition, both gross and fineotor skills can be assessed from birth to age 6 years. This

ssessment is useful for children with intellectual disabilitynd autistic spectrum disorder as well as children with visualnd hearing disorder.

The WIDEA-FS was developed to assess emerging selfare, mobility, communicative, and social skills in earlyhildhood.41 This tool can help describe how basic compe-encies in feeding, moving, prelinguistic communication,nd social interactions are emerging in the first 2 years of life.

Although these assessment tools can help us understand aange of internalizing, externalizing, regulatory, and adaptiveehaviors, they also highlight the importance of supportive

nterventions for families of children who survived VLBWnd ELBW. In this context, several brief assessment tools arevailable that can describe the caregiver’s physical and men-al health, parenting stress, maternal depression, and familytress. These are described in Table 3 and include the shortorm 12-item (SF-12) indicator of physical and mental healthtatus, the short version of the 3rd edition of the Parent Stressndex (PSI-SF), the Center for Epidemiologic Studies Depres-ion Scale (CES-D), and two family support form, the Sup-ort Functions Scale and the Family Support Scale.Two tools deserve comment. The Recent Life Events Ques-

ionnaire describes the impact of major stressors, such asarriage, divorce, moving to a new job, loss of a job, and loss

f physical or mental health.42 These events are criticallymportant in terms of available family resources and stabilityf parent–child interactions. The Hassles and Uplifts operatet a micro level and can indicate levels of stressors and buffersuring daily activities.43

elping Children withmotional, Regulatory,ttention, Social,nd Adaptive Challengeslthough the effects of prematurity and low birth weight can

ncrease the risks for suboptimal developmental, behavioral,r social outcomes, these effects can be reduced or mini-ized with educational, family, and social supports. Re-

earch points to the importance of environmental factors onehavioral and emotional health as well as adaptive skills and

ndicates that functioning and participation of prematureirth and low birth weight survivors can be improved ororsened depending on postnatal environments.The two most frequently used methods to promote behav-

oral, social, and school success of at-risk children are parent-

ased interventions and early-education programs. With

Table 2 Social, Emotional, Behavioral and Adaptive-Functional Scales for Childhood Disabilities

WIDEA-FS™ VABS-IIASEBA SDQ

ITSEAWarner Initial

DevelopmentalEvaluation of Adaptiveand Functional Skills

Vineland AdaptiveBehavior Scales

Survey Form, SecondEdition

Achenbach Systemof Empirically

Based Assessment

Strengths andDifficulties

QuestionnaireInfant Toddler Social

Emotional Assessment

Age Range Birth-36 months Birth-19 years CBCL 1.5-5 years Birth-8 years 1-3 yearsDomains Self-care

MobilityCommunicationSocial skills

CommunicationDaily livingSocializationMotor skills

InternalizingExternalizingTotal problemsLanguage development

survey (LDS)C/TRF

EmotionalConductHyperactivityInattentionPeer ProblemsProsocial

InternalizingExternalizingDysregulationCompetenciesMaladaptive behavior

Concurrent Validity Capute ScalesChronological Age

VABS IKABC2

DSM 4:AffectiveAnxietyPDD, ADHD, ODD

CBCL CBCL 1.5-5Maternal distressMullen ScalesVABS IMacarthur-Bates CDI (words

and sentences)Disability Samples Children in Early Intervention,

or children with specialhealth care needs

Children with autisticspectrum disorders,mental retardation, ordevelopmentaldisabilities

Children referred forbehavioral healthconsultations

Children with hemiplegicCP

Children with chronicillness

Diverse community sample

Time to Administer 5-15 minutes 20-60 minutes 20-30 minutes 10-15 minutes ITSEA 25-30 minutesBITSEA 7-10 minutes

Abbreviations: KABC2, Kaufman Assessment of Battery for Children 2nd edition; BITSEA, Brief Infant Toddler Social Emotional Assessment; CDI, communicative developmental inventories; CBCL,Child Behavior Checklist; C/TRF, Caregiver/Teacher Report Form; DSM4, Diagnostic and Statistical Manual 4th edition; ADHD, Attention Deficit Hyperactivity Disorder; PDD, PervasionDevelopmental Disorder; ODD, Oppositional Defiant Disorder.

Behavioraloutcomes

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48 M.E. Msall and J.J. Park

ery few exceptions, programs based solely on parents (ie,arent-education plans such as Parents as Teachers) havehown to improve adverse parenting styles likely to be foundn families from low socioeconomic background (eg, power-ssertive disciplines such as physical punishment, not pro-iding “stimulating learning experiences” at home); however,uch improvements fail to have positive impacts on chil-ren’s cognitive or behavioral outcomes. The overall effec-iveness of the “parent education � child-based programs”pproach, in terms of providing long-term benefits to chil-ren, remains inconclusive. Although this “combo” strategyoes not seem to improve children’s academic performance,

t yielded better results for behaviors in children with behav-oral problems.

Interventions targeting young children directly may be theost effective of all at promoting academic achievement and

educing problem behavior, although their long-term effec-iveness is still in question.45

Another key area related to behavioral competencies is thearent–child communicative environment. Risley and Hartompared lives of children from low SES families to the chil-ren from upper SES families, starting when infants were 7onths of age and continuing until they were 36 months of

ge.44 The authors found that, not only there were large dif-erences between families in the amount of time, encourage-

ent, and conversation given to their toddlers, but it was thearents’ amount of talk (not their social class or income orace) that predicted their children’s intellectual accomplish-ents. Risley and Hart contend that focusing solely on par-

nting style is misdirected, and therefore parents should bencouraged and helped to learn to increase “extra talk (con-ersational talk, positive reinforcement, complex ideas, andaried vocabulary)” with their children in addition to thesual “business talk (essential commands for parents with

able 3 Family Outcomes and Well-Being Survey Tool

Instrument No. of I

F-12 Version 1 (short form)51 12

arent Stress Index 3 (PSI) Short Form52 36

enter for Epidemiologic Studies DepressionScale (CES-D)53

15

upport Functions Scale, Short Form (SFS-SF)54 12

amily Support Scale (FSS)55 18

hildren).”45 e

One of the major studies which demonstrated the impor-ance of early intervention in promoting cognitive skills, be-avioral health, and social skills was the Infant Health andevelopment Program (IHDP). This multicenter study wasesigned to evaluate the effects of early intervention onealth and developmental outcomes of low birth weight sur-ivors. Nine hundred and eighty-five premature low birtheight infants from 8 U.S. metropolitan cities were recruitedetween 1985 and 1986 (37% of the recruits weighed 2001-500 g, 37% weighed 1501-2000 g, and 26% weighed lesshan 1501 g). Of those, 377 were randomly assigned to thentervention group, whereas 608 were assigned to the fol-ow-up only group (ie, control group).46 Children in theHDP intervention group and their families experienceduality home visits and center-based early childhood full dayducation. Home visits began at neonatal discharge and con-ucted on a weekly basis during the first year and biweekly inears 2 and 3. The home visiting lessons consisted of rela-ionship-based learning with a focus on enhancing commu-ication skills and facilitating parent problem solving forhild behavior stressors and family challenges.

The center-based early childhood educational experienceegan when the infants were 1 year of age, operating 7 to 9ours a day, 5 days a week with children encouraged tottend a minimum of 4 hours per day. The curriculum wasentered on games and activities that addressed cognitive,ne motor, language, gross motor, social, and self-help skills.Three-year follow-up of both intervention and control

roups revealed substantial differentials in the percentage ofhildren with borderline (IQ �85) and impaired (IQ �70)ntellectual performance. Among children with the highestarticipation rates, 1 in 13 had cognitive impairments.47 Inontrast, 2 in 5 children with the lowest participation ratesad cognitive impairments. In addition, the program’s great-

Description of Instrument

SF-12 is a widely used and accepted generic measure ofhealth status that covers the areas of physicalfunctioning, pain, health, vitality, social functioning,and mental health. The higher the score, the better theperson’s health.

The PSI measures stress during parenting and includesParental Stress, Difficult Child, and Parent-ChildInteraction.

The CESD measures the negative emotional states ofdepression and stress. The higher the score thegreater the level of depression or stress.

The SFS-SF measures the parents’ need for differenttypes of help and assistance in raising preschoolchildren. The higher the score the greater is theparents’ need for help and assistance.

The FSS measures the helpfulness of people and groupstowards members of family in raising a young child.The higher the score the more helpful the sources ofsupport.

tems

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Behavioral outcomes after extreme prematurity 49

Qs. Approximately 40% of children from the control groupad mental retardation at age 3 if their mothers had cognitiveisabilities compared with 15% of intervention childrenhose mothers had cognitive disability. Thus, those childrenith the highest risk can be helped before school age.The assessment of cognitive, behavioral, and health of the

articipants at 3 years of age showed that children in thentervention group had significantly higher scores on the in-elligence test and receptive vocabulary test than the controlroup.48 The intervention group also scored lower on re-orted behavior problems than the control group. Amonghildren who survived birth weights of less than 1500 g, theean Stanford Binet IQ of the intervention group was within

he broad range of normal (�85) but was in the slow learnerange for the controls, favoring the intervention group by 10Q points when children with cerebral palsy were excluded.mong children who survived birth weights of less than000 g, there was an 8 IQ point difference favoring the inter-ention group. Overall, the short-term benefit of the IHDPntervention was that preschool intellectual disability coulde prevented among children at double jeopardy because ofrematurity and parents with cognitive disability due to pov-rty and low SES.49 Ongoing assessment at 18 years of ageevealed substantial benefits in math and vocabulary scoresnd decreased risk-taking behaviors in those children whoere born at 2001 to 2499 g.50 Additional studies will exam-

ne young adults’ vocational, social, and behavioral compe-ence.

onclusionhere is increased recognition that children who survive verynd extreme prematurity have a spectrum of behavioral,daptive, and social challenges. This vulnerability requiresoth ongoing surveillance so as to guide families in the man-gement of feeding, sleep, play, communication, discipline,nd learning. This cannot be solely done by health profes-ionals alone, but by explicit community partnership sup-orts that promote exploration, curiosity, interaction, and

earning. If neonatal centers of excellence combine develop-ental surveillance, family support, and community partner-

hips, then we will be better able to understand the complex-ty of developmental and behavioral outcomes. This will leads to understand the pathways of risk and resiliency.

eferences1. Allen MC: Prematurity, in Accardo PJ (ed): Capute & Accardo’s Neu-

rodevelopmental Disabilities in Infancy and Childhood (ed 3, vol 1).Baltimore, MD, Paul H. Brookes Publishing Co., 2008, pp 199-226

2. Colvin M, McGuire W, Fowlie PW: Neurodevelopmental outcomesafter preterm birth. Br Med J 329:1390-1393, 2004

3. Salt A, Redshaw M: Neurodevelopmental follow-up after preterm birth:follow up after two years. Early Hum Dev 82:185-197, 2006

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